Tag Archives: ME

A must read. The Telegraph in the UK featured an article written by Sarah Knapton. Ms. Knapton goes many steps further to malign sufferers of ME than the PACE trial report did, in her report of a follow-up study.

When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity…

The latest post fromMEAdvocacy.org starts off with the title and first paragraph:

“Dr. Davis Debunks NIH’s Claims of Fairness”

Posted by Tracy Smith, Sept. 3, 2015

Dr. Davis’ accomplishments and his ideas of how his team will work in studying severe ME patients. The deception emanating from the National Institute[s] of Health (NIH) is that ME/CFS funding is a priority for them, yet NIH have rejected Dr. Davis’ application for funding for his study of severe ME patients.. Due to some very generous private funding, Dr. Davis’ Big Data study on Severe ME will be starting but, there is a desperately need for government funding to keep it going.

Myalgic encephalomyelitis (ME), is a complex disease involving profound dysregulation* of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport as well as cardiovascular abnormalities. The disease affects people of all ages, genders, races and economic levels.

Sunshinebright continues:

It is widely known in “ME circles,” that the NIH , has pointedly reduced, and kept very low over many years’ time, the funds allocated towards research for finding biomarkers, treatments and ultimately, a cure for this severe, debilitating disease.

The blatant deceptions coming out of the NIH; that “highly respected institution,” have them claiming that funding research for ME is a high priority. NIH also claims that requests for applications and submission of applications have been forthcoming in very few numbers; and those which have been submitted, have been of poor quality. NOT TRUE.

Due to the fact that these (false) claims are coming from such a prestigious, august government body, their claims – whatever they may be – are taken seriously – unfortunately, for ME patients, in this case.

The fact is that our ME community has seen a rise in the number of scientists and researchers from our American medical and scientific communities, and they are coming forward to begin the much-needed research for ME. The backgrounds and experience of these scientists are of the highest caliber, and they have had their applications for NIH funding for their ME studies returned unapproved.

The NIH has approved a great deal of applications from many of the researchers who want to work on ME research for research grants ; however, the applications that were approved were NOT FOR RESEARCH RELATING TO ME. When ME is listed as the disease on the submissions, the applications are not approved.

NIH has approved countless applications for studies from these same scientists, as long as it was not ME/CFS related. Could it be that the famous virus hunter, Dr. Ian Lipkin as well as Dr. Mady Hornig, suddenly lowered the quality of their application when it came to ME? Did Dr. Ronald Davis, the award winning inventor with decades of NIH funded research, abruptly lose his brilliance to be graded “not that great” by the application reviewer?

It might seem like it, according to the treatment it gets from our highly-regarded Health & Human Services Department (HHS), National Institutes of Health (NIH), Centers for Disease Control (CDC) and other sub-departments of the huge HHS.

It seems like there is a vendetta against ME patients in the U.S., and also in other countries, where very ill patients are diagnosed and treated for psychosomatic illness, when they are really suffering from a multi-symptom, extremely painful and debilitating disease.

The whole body is affected. Not just nerves; not just the brain, not just the lymph nodes; not just the immune system; not just the muscles, not just the major organs of the body – BUT ALL.

Another thing: Approximately 80% of patients who are suffering with ME are women. Some scuttlebutt I’ve heard has suggested that, since such a huge percentage of patients are women, some governmental entities may not put as great importance on funding for research for ME as they would if the disease was weighted differently.

The other 20% is comprised of men and children. Yes, children! Also, it is not unusual for members of the same family to fall ill with ME. Outbreaks have also been reported within communities.

Unraveling the “mystery” about ME:

Myalgic encephalomyelitis (ME) is a debilitating, often disabling, illness recognized as a neurological disorder by the World Health Organization since 1969.

After an outbreak in Nevada in the 1980s, the CDC coined the term “Chronic Fatigue Syndrome.”

There are no FDA-approved treatments and no diagnostic tools for ME.

Between 836,000 and 2.5 million U.S. residents are afflicted with ME, with 84 to 91 percent not yet diagnosed. True numbers are highly under reported

ME-related medical expenses and lost productivity cost the U.S. up to $24 billion annually.

In research funding, ME receives less money for research than hay fever, and ranks far below similarly disabling illnesses; such as:

1) ME: About $2 per patient per year in NIH funding ($5 million in FY2015);

2) Multiple sclerosis: About $250 per patient ($103 million in FY2015); and

3) HIV/AIDS: About $2500 per patient ($3 billion in FY2015).

Patients with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

At least one quarter of ME patients become housebound or bed bound, often for years. Many become unemployed.

Loss of job as disease progresses has dire economic consequences for patients, families, and the country as a whole, when considering the loss of productivity.

Ask most any person in the medical community if they heard of “ME” or “Myalgic Encephalomyelitis” and, guaranteed, almost all will answer, “No.” Ask if they’ve heard of “Chronic Fatigue Syndrome” or “Chronic Fatigue” and more often than not, they will say, “Yes.” But, they really have no idea at all what it is. I speak from my own personal experience. The many doctors I’ve visited over the last year, when asked, had the identical response. Also, this type of response is reported by patients when questioned about their doctor visits. Too often, they encountered uninformed and uncaring doctors.

Medical schools should begin instituting information about ME in their curricula.

Thank the CDC representatives for that great faux pas 30 years ago in Nevada, while investigating an outbreak, when they imprinted “Chronic Fatigue Syndrome” (CFS) on all patients, and which, unfortunately, stuck.

The ignorance shown in the face of a “mysterious” disease 30 years ago is continuing.

Llwellyn King offers his take on how sufferers of ME cannot enjoy this holiday season as others can, who are not afflicted. Those suffering with ME are forced to bear the loneliness that the isolation of being ill with this chronic illness brings. Socializing is drastically reduced.

He speaks of the necessity of focusing on the love that the family members, lovers and dear friends give to the chronically ill, especially ME patients. Llewellyn is passionate as he reveals why he and others have taken up the torch to advocate for this debilitating disease.

A very special person, named Clarissa Shepherd, posts many knowledgeable, inspirational and supportive articles on social media about M.E. She has M.E. Myalgic Encephalomyelitis. M.E. patients look to her for encouragement and for information about their shared chronic illness. Clarissa is truly an inspiration to all; not only to sufferers of M.E. I am honored to share her poetry with my followers:

[Will you] walk with me?
First take my hand. We’ll talk as we go.

Let’s take the path less traveled. They’ll be few that we know.

Let’s try to remember, where we first began.
What were you doing? Where were you in your life?
What kind of person were you? I can see you as you go.

It started so innocent. Seemed only a short jaunt.
This new path that we’re on, seems as some kind of a taunt.

Look behind us. Friends are lagging as we travel.
They don’t seem to want to go with us.
We must stop working, end a career, halt our life as we go.

Do you feel afraid, unsure, confused?
We’re going down a winding road now. Hold my hand tightly.
Do you miss who you were? The road is a slippery slope for us now.
We must cling together as we go.

See over there. The doctors, tests, medications?
We’ll get to know this stop well. Do you need to rest?
We can stop and take it all in. Seems so unreal.
This can’t be where we should be.

There’s hardly anyone on this part of the trail.
We must move forward, somehow.
Together we can go on.

We’re learning, as we’re on this new journey.
We barely recognize who we were
and have forgotten where the path began.

I feel your grip stronger.
You’re learning to twist and turn with the path we’re on.
Finding your way through the weeds which have grown.
There are not many people we know with us now.
They stepped off the beaten path.

You seem to be growing, into your own, as we walk.
You understand more, feel more, care more, appreciate more.

What we’re leaving behind, doesn’t seem to be as important,
as what we see ahead of us.
How creative you’re becoming, in the way you’re learning to walk.
How courageous and compassionate you’ve become.
Who is this new you?

You’ve found so many things inside you,
that you never knew were there before.
Our road is still difficult, yet more passable now.
Can you see the clearing ahead?

I feel your grip lessen, as you learn to maneuver the winding trail.
Pain, sorrow, fear, anger, they’re falling away a bit now.
There’s a bench at the end of the path. Let’s sit a bit.

You’re not the same as you were. A bit worn, yet brave as well.
I feel a rebuilding of your spirit. It can be seen in your smile.

There are new faces looking at us. New people who understand.
I feel they’ll be important, for our future, as we find our way.

Although our journey is rocky, we’re following through.
This path less traveled by me and you.

Today, I came across an interesting article, dated January 12th, 2012, written by Vincent Racaniello, at the time Professor of Microbiology and Immunology at Columbia University. In preface, I have always wondered why the AIDS epidemic drew such huge attention in the public, media, scientific and governmental areas, and ME/CFS was pushed under the rug, so to speak.

Of course, I can’t dismiss the fact that the AIDS epidemic caught the attention of the show business community, since it was in this venue that the infection became a highlighted problem. Big names in Hollywood and other celebrities, took up the cause to raise funds for research in the 1980s, and the government was caught up in the hurricane-like fanfare.

Acknowledging that the HIV infection was extremely contagious to others, and that, in the beginning of the outbreak in the US, almost half of the patients died rather quickly; patients with Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome (a misnomer and huge insult to patients) are not contagious to other people. IMHO, ME sufferers are contagious to their own bodies; bodies that are losing the raging battle within.

But, I digress. The article, part of which is quoted below, states very clearly, the differences between AIDS and ME/CFS as diseases, and how the scientific community and the US government departments (mostly the CDC in the beginning) did not take the seriousness of ME/CFS to heart. At the same time as the outbreak of AIDS in the 1980s, the CDC diagnosed ME/CFS as a psychological illness, dubbed it “CFS,” and diverted research funds to other areas. Until then, it was correctly called ME – Myalgic Encephalomyelitis, by the World Health Organization (WHO).

Here is the quote:

In contrast to their excellent work on AIDS, the CDC has stumbled when tackling CFS. The CDC has dismissed evidence that CFS is an organic disease, and spent funds on investigating psychiatric and trauma-related causes, rather than infectious origins. The agency also diverted funds designated for CFS to other programs. These and other missteps alienated the CFS patient community—the opposite of what the agency accomplished with the AIDS community.

In part due to the standardized case definition of AIDS, identification of a candidate virus was relatively rapid. Determining its role in the disease was facilitated by the development of a blood test, which could be used to prove that HIV-1 caused AIDS. The relationship between HIV and AIDS was further confirmed by the development of antiviral drugs that inhibited viral replication and helped alleviate the symptoms of the disease.

Why have investigators failed to identify a virus behind CFS? (It is not due to the lack of appropriate technology; this has improved substantially since the 1980s with the development of polymerase chain reaction and rapid DNA sequencing.) One explanation for this dilemma is that an infectious agent does not cause CFS. However, there is plausible evidence for an infectious etiology, including observations that the disease is known to occur in outbreaks. Furthermore, in many cases the onset of symptoms appears to begin with a flu-like illness. Additionally, CFS is a heterogeneous disease, and may be caused by several different agents or a combination of viruses and non-infectious conditions. Another possibility is that an infection initiates an immune response that spirals out of control, leading to CFS symptoms. This scenario implies that at least some CFS patients have underlying deficits in immune regulation. If that’s true, it will be very difficult to identify the virus involved because it will likely have been eliminated from patients’ systems by the time CFS symptoms become apparent.

In retrospect, it is clear that the properties of AIDS made it an easy disease to understand. While the path to understanding CFS has been clouded by non-scientific issues, in the end the main reason why we do not understand this disease is because it is extraordinarily complex. But that never stopped a good scientist.

Latest video from Jen Brea on “Canary In A Coal Mine.” Jen is very sweet in her “Happy Thanksgiving” message in which she brings us up to date on the projected time for next year’s opening of our long-awaited release of the film.

“Canary In A Coal Mine” will tell the story of ME/CFS patients. Funds for the film were amassed in the record-smashing Kickstarter campaign. The original goal was to raise $50,000, and within the given thirty days, well over $200,000 were collected!

What a fantastic statement about the importance of this film now in progress and the impact we are hoping it will have for the world’s sufferers of ME.

This latest video highlights the need for basic teaching materials about ME in medical schools which are currently underrepresented.

Current research includes learning from the past, integrating computer (artificial) intelligence, and it also will help with case definitions. Also being looked at are different ways of using multiple and varied and more complex modeling to understand how systems function.

Prof. Jason states that the US government now recognizes that ME is not a “yuppie flu,” and affects many more people than originally thought, and that there are many organizations that are stopping the use of “CFS” are using alternative names; such as, ME or ME/CFS or Myalgic Encephalomyelitis. He believes that the current research has helped in that shift of designations.

He also mentions that when deciding on a case definition, data and observations should be used, rather than consensus methods. What are the core features? This should be contributions to the debate that is currently ongoing in regard to these definitions.

Prof. Jason mentions different lines of research that his department is focusing on:

Using a De Paul patient vs controls questionnaire to gather a data base;

Involve professionals with environmental, public health backgrounds as well.

He believes that ME is the greatest challenge to medicine we have today. What is really a puzzle for the medical community are the complex illnesses. He wants to get into the mechanisms that are involved in illnesses like ME and he hopes to have a new birth of understanding and what needs to have the greatest focus.

Most important, is that adequate funding is necessary for the type of research that is needed to accomplish Prof. Jason’s goal of getting to the roots of what causes ME.

“At the present time, there are many economic challenges to countries. Difficult times for researchers.” He has faith and hope “that, over time, the greatest medical insights will occur and will come to fruition with the help of those patients who have the most complex system issues, such as ME.” He expects to “bring together the best scientists and researchers in the world, to study one of the most neglected, but most important, medical illness facing our world.”

I subscribe to Cort Johnson’s “Health Rising” blog. He has taken up the cause of those suffering with ME/CFS for a long time (he is one of the millions of patients). As in one of my recent posts, the plight of sufferers of Myalgic Encephalomyelitis (ME) has been taking up space in headlines of top newspapers.

The current post on Cort’s blog, speaks to the similarities between MS (Multiple Sclerosis) and CFS (Chronic Fatigue Syndrome). CFS is a misnomer for ME (Myalgic Encephalomyelitis); however, CFS seems to be a more recognizable name, since its coining by the CDC many years ago.

The issue that Cort addresses in this latest post is the “fatigue” suffered by patients who have the two diseases: MS and ME/CFS.

He states:

Multiple sclerosis (MS) ranks amongst the most fatiguing disorders known. Both ME/CFS and MS are fatiguing disorders – but is their fatigue similar?

It is a major topic for research: there have been 10 research studies in the last 5 months into illnesses with “fatigue” in their titles or because they are known to create abnormal, exhausting fatigue in the patients!

Cort goes on to describe the differences and similarities between MS and ME/CFS regarding:

Severity;

At what stage in development of disease does fatigue start to occur;

Types of fatigue;

What causes the fatigue to appear at different times of day;

Does weather cause changes in severity of fatigue;

How does exercise regimens affect patients’ fatigue;

How does exercise affect pain experienced by patients;

What other actions contribute to fatigue?

The word “fatigue” is a word that really doesn’t properly describe the bone- muscle- nerve-deep total exhaustion (and pain) experienced by ME/CFS patients; and yet, it is used offhandedly by the medical community, some scientists, the governmental agencies who are charged with caring for the health of their citizens, and others who are incapable of understanding the type of “fatigue” meant.

As part of his conclusion, Cort states:

Despite both disorders being associated with high rates of fatigue, people [with] ME/CFS and multiple sclerosis had very different responses to exercise – and display very different types of fatigue. The fatigue in MS is omnipresent, but is not greatly affected by exercise. The fatigue in ME/CFS is..

It is becoming more and more evident that there are so many more individuals than ever thought, who have the debilitating chronic illness, ME. Since last year, the number of assumed cases of ME has gone from 1 million to up to 4 million in the U.S., and from 17 million up to 20 million worldwide!

Here is a young medical student, at Stanford University, named Ryan Prior, relating in a short dialogue, his own experience with ME.

Although he is supposed to be “recovered,” Ryan mentions the daily medications he is still taking and gives himself weekly injections and there is also a monthly IV that he gets.

So, his “recovery” really means that, as of now, he is better able to lead a more “normal” life, but with medical support.